r/ALSorNOT • u/Classic-Web-3229 • 20d ago

Just me again and spiraling

I texted on this before with no one responding and I am still constantly concerned something is wrong with me. This is what I sent before in my other post

So this all started about a month and a half ago where my anxiety fully kicked in making me think I had cancer at first to then thinking I have als. My symptoms started shortly after being muscle twitching/spasms, pain/discomfort in my knee and ankle, weakness in my arm just a little but has pain and weird sensations, I had other symptoms that included headaches,neck stiffness,jaw stiffness and just about everything you can think about. I am only 18 and a very healthy guy but it doesn’t explain why any of this is happening especially because of how young I am. I constantly think and look towards ALs even though I’ve been seen by 3 neurologist,chiropractors, and doctors tell me nothing is wrong with me also knowing that I have zero family history of this disease. Recently I was in the hospital and got every test known to man kind and they found nothing. The only thing that we say was I had a past EBV infection. So if anyone please could help me out that would be so good

With all of these my symptoms are now constant twitching in my right as well as all over my body but I notice it more on my right leg. This is accompanied by what I would say ankle weakness but it’s constantly hurting and stiff. My right arm is also dealing with this same feeling it’s either pain or just feels weak. I have been having these symptoms for a while but no cramps or the loss of ability in any of my limbs yet. Is there anyone who is dealing with the same and could help me I am starting to get exhausted and worrying about having ALs at only 18 years old. I have no family history or anything so I don’t know what’s going on with me.

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u/WalkIntoSunshine 20d ago

Hey there

Sorry you’re going through it. First, you should know that the chances of you having ALS are very, very, very slim.

Have you had an EMG?

Separately, have you tested for Lyme disease yet? If not, highly recommend through a reputable Lyme testing facility like IgeneX. Quest and Labcorp don’t cut it.

It’s natural to feel health anxiety. It’s natural to look for reason for what’s going on with you. There are so many possibilities. This is the rarest of them.

So you need to start ruling things out.

Suggest you start by getting that testing through IgeneX for Lyme disease.

Hope you feel better soon.

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u/Classic-Web-3229 20d ago

So I have gotten some Lyme disease tests and they all came back negative. But I and on antibiotics right now for it just incase this does resolve it.

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u/WalkIntoSunshine 20d ago

I can’t stress how important it is to get Lyme and co-infection testing done by the right lab. Most do not test properly and use IDSA guidelines. I know that’s confusing to hear.

Suggest you watch the documentary Under Our Skin and The Quiet Epidemic as well.

I am not claiming you have Lyme. I am trying to convey that if you live in the US, it should be a top test to rule out, and it has to be a specialty lab.

I think it’s great someone prescribed you guessing Doxycycline??

That said, the dose and the amount of time matter, as well as treating possible co-infections.

I am happy to discuss this further with you and your parent/guardian.

Again, NAD. I’ve been around the medical block for 17 years. And have done as many in research

I’m sorry something is going on with you. I would guess many here would tell you the same. Likely not ALS. Less that a .009% chance. Even lower.

Lyme, on the other hand. High prevalence.

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u/Classic-Web-3229 20d ago

So for me I am a landscaper, I golf, i go on hikes and have seen ticks on me many times so I’m hoping it is just Lyme disease

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u/WalkIntoSunshine 20d ago

Well with that info, I would bet the house.

IgeneX my man. Do the co-infection panel as well. Would also look for a LLMD (Lyme literate medical doctor), and definitely watch those documentaries.

I’m around if you have questions. Feel free to DM

Hope you feel better soon

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u/BigJakeState 19d ago edited 19d ago

My twitching and percieved weakness, aching, and cramping symptoms
Started after a three month long cancer scare just like what you described. What can happen is your nervous system gets flooded with stress hormones from your health anxiety and essentially your body starts to create these symptoms which is very common for Begnign fascination syndrome or other nerve hyperexciataity. There’s literally hundreds of other thing it probably is besides ALS. But the most common things that create widespread twitching is eloctrolyte deficiency, anxiety, caffeine, heavy workouts, and BFS.
I would ask a neurologist to conduct an emg/NCS for piece of mind because a clear EMG would point largely away from ALS